Tummy Turmoil

Letter to My Primary Care Physician

I don't even know how to eat a healthy diet anymore. It was a struggle before being on chemo, as I have the oral lichen planus which only permitted bland foods and little chewing. I've had that almost permanently for seven years.

I was also on a fairly bland diet because of GERD. But, now since I cannot take H2 blockers or proton pump inhibitors, controlling the GERD is not happening, even though I've got the misoprostol which helps a bit, and that other one I can only take on an empty stomach. (Sucralfate?). The only time of day I have an empty stomach is when I first wake up. After I eat something, my stomach is never empty for the rest of the day. My food just sits there, burping and nauseating throughout the day. I dread eating anything most of the time. And now of course, we realize all that coughing has been caused by the GERD (Though it started with that cold or flu I had before christmas).

So, as each day goes by, I test whether or not I have appetite. If I don't and I eat, I just feel worse. So, I might nibble on whatever feels safe to eat. Sometimes I can eat soup, cereal or even part of a frozen dinner. I hate it that lettuce makes me sick now. I miss my salads!

If I have to stay on this chemo the rest of my life and just tolerate the inadequate control of my tummy problems (also have hiatal hernia), I know I cannot maintain a "healthy diet" that will change my cholesterol issues. I find this whole thing extremely frustrating and discouraging. Even the Questran sits in my stomach like a rock and queasiness is my companion. I've had to carefully balance my health for years. This is out of control. I'm at a loss for what I can do.

Doesn't seem worth it to be on the chemo!


  1. Liz,

    That doesn't sound fun at all. Does peppermint help? Is that an option. I know that when I wasn;t exercising my metabolism slowed to a crawl, and one fo the things I used to fight heartburn was altoids, which stimulated digestion.

    I'm aware of Phytofoods/Superfoods nutritional complexes that come with probiotics and various digestive aid enzymes. Perhaps those are one option?

    I don't know how contraindicative the latter would be for your current health conditions, but it may be worth looking into.

    Hope you feel better.

  2. Actually peppermint and I do not get along. First of all, I have a condition in my mouth that I have been told is aggravated by peppermint. Since it has a bite to it, I can understand why. My mouth is very sensitive.

    I use probiotics, but have been researching new options as well. The ones I use are not in yogurt. There's too much sugar in the standard ones that supposedly have probiotics in them. I just can't see how the sugar wouldn't take away from the benefits. So, I get the specialized kind that has to be kept refrigerated.

  3. Liz,

    I know about your mouth condition, because I have the same condition (it's Brian from the brief email correspondence about UCSF months ago). I've migrated over from Erosive Oral Lichen Planus. What I didn't know was that peppermint was an OLP trigger. I'd been warned about cinnamon, but the peppermint thing is now on my "Foods to Avoid" checklist. That actually makes a lot more sense as I just sucked on some Altoids the other day, and am currently battling an OLP flare-up.

    In any event, I can't pretend to know the dilemma you're facing with respect to your medication, and preexisting problems that contribute to poor digestion. I would ask for a Comprehensive Metabolic Panel blood test at some point to ensure you aren't totally without nutrition. If that's the case, you might ask your doctor if supplements are an option (or at least 1 daily vitamin).

    With respect to lowering LDL ("bad") cholesterol, as I'm sure you're well aware already, cutting saturated and hydrogenated fats from your diet (e.g. red meat, dairy/cheese, eggs, fried foods), and replacing them with Monounsaturated fats, and Omega-3 fatty acids (e.g. olive oil, nuts, peanut oil, canola oil, avocados, and fish) is your first step toward preventing an escalation in bad cholesterol. While high-fiber foods will lower your bad cholesterol over time.

    You're well informed, so I doubt I'm telling you anything you didn't already know, but it's worth mentioning, as I've been in a similar boat with previously high cholesterol. High fiber, more fish, increased exercise, and more water worked magic for my own cholesterol "project" jumping through hoops with a local cardiologist 3 years ago.

    Thanks again for the tip on the peppermint thing. Hope things turn around dietary-wise.

  4. Hi Brian, Thanks so much for caring, and all the suggestions! :-)

    I have a Comprehensive Metabolic Panel blood test at least once a month. It is part of the leukemia follow up. My blood must be watched closely, at least in the CBC and CMP are concerned. The only thing that shows up in the CMP that's abnormal is the alkaline phosphatase, which is at least double what it is supposed to be. When I bring it up, it's almost a ho hum response. I've been to the gastroenterologist at UCSF for two years trying to figure that one out, (plus a high GGT.) Also saw the liver specialist up there. After all that time, a whole lot of testing we are still at square one. I just have to keep working at it on my own. Otherwise the next step is a liver biopsy. What bothers me is if the numbers for normal are increased so high, then why is it not a big enough concern?

    As for the cholesterol problem. I was on statins before. It was doing quite well. As far as diet is concerned, I've changed it drastically over the years. But, since the chemo started no more statins, and things have quickly sky rocketed. I know part of it is not being able to have a proper balanced diet. So many healthy fruits and vegetables are forbidden. Can you believe it? Pomegranates, for example! All citrus! Then, because of the GERD, a decent salad is all but eradicated. Yes, I can eat avocados, though, how much should one eat? They are high in calories, too, even though they are good for us.

    Another part of the problem is that I awaken feeling like a pregnant woman. Just the idea of food is nauseating. It takes me several hours just to get a piece of toast down me. Then, if that is not too bad, later I can maybe have some soup. It just seems no matter what I eat causes problems right now. I'm keeping a food diary to see what is working best, and that which is consistently worse.

    I know some supplements with vitamins will help but would you believe? even some of them are contraindicated with the chemo!

    Started on Questran for the high cholesterol now. Hopefully it will help without having too many tummy side effects.

    I have an appointment with the oncologist next week, then the local gastroenterologist two weeks later. Hopefully by that time, some better answers will be figured out!


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